Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
Not feeling great today.
Do you ever do that this where you know exactly what you want to write about, until you got to write it, because honestly same.
I’m blaming the fact I had the covid vaccine yesterday, and I don’t feel great, but it’s better than covid.
If you pay enough attention to this blog, you may notice that I posted multiple times yesterday and then deleted the posts.
This is because my streak on this blog feels like it’s very important to me. And for a reason I’m not sure about, my posts missed a day 3 days ago, so I lost the steak.
This post is a test post to see if I’ve fixed the problem.
I know it might seem silly that I post daily on this blog, or that the steak matters to me. But on days when I’m struggling with my self-worth the fact I’ve posted on this blog, the fact this blog is still going, means a lot to me.
I have tried to post many blogs before, and usually given up. But every post in this blog is a reminder that I haven’t given up yet.
Let’s just say this was my day today. I got to the end of it, and don’t have the energy to write.
I just wish my body, my motivation and my energy lined up. But not today I guess.
Sometimes I spend a lot of time thinking about what my life might be like if I wasn’t disabled. The life I may have been able to live if things were different, if the world that I live in, became accessible to me.
It’s nice sometimes to let my imagination wander, but I do wonder if I do it to much. I do wonder if I spend to much time thiking about what could be, and if it causes me more harm than good. No amount of time thinking about things maybe being different is actually going to make the world accessible to me. No amount of staring at a steps is going to turn them into ramps. This is paraphrasing of a quote by Ali Tanaka, if you want to look into it more. No amount of focusing on not being disabled, is going to make me not be disabled. But the world is hard, and sometimes you end up there.
I know that logically I need to focus on my reality, focus on today, on where I am now. To make the best of a bad situation, as it were. And some days I can do that no problem, some days I know my life relative speaking is pretty good. Other times I’m really struggling with the idea of existing for the rest of my life as me.
I’ve tried to do something with my life, to make the best of it. But there’s only so many times you can fight against the inacessability of the world around you, before you wonder why you even try. But I deal with things the best I can, as we all do.
The funny thing, that isn’t really funny, is how I get judged by people who don’t know me for how I deal with life. A post like this would be called to negative, even though ofren it’s more real than the positivity I feel forced to disaplay to the world. Honesty itsn’t something people tend to want out of you when your disabled.
When I started this post I knew where I was going with it, but the more I have written, the less I have been sure. Sorry, I’m trying.
The last post I wrote here was on my difficulties writing, and now that I’ve opened my laptop, I feel like in a way I could write more. That got me wondering if my biggest issues is opening my laptop? Like a more techy version of struggling to pick up your pen, I suppose. Once it’s in your hand, the hardest part is over.
So maybe once I open my laptop, or perhaps more specifically the file I’m working on, the hardest part is over. Who knows?
All this said, as I sit here writing this, despite my increased motivation to do so, I can feel the fatigue setting in my body. Despite only having been awake a couple of hours, I know that I could really do with a nap. But i don’t want to put that need to nap on the person I live with. We’re watching something together, and I don’t want to destry, I mean I don’t want my fatigue to destroy what we are doing. I know they will be okay with me sleeping, but it being something that feels so out of my control, doesn’t mean I don’t feel guilty. If I’m completely honest it makes me feel more guilty.
It’s an odd feeling, being both motivated to write, and fatigued at the same time. My brain feels wired, with words and ideas. It feels like breathing to get them out, to see them on a screen, to get some sort of release. Like I don’t even have to try to get it done. But my body feels tired, like I can’t keep up with the words I want to write. Like my body didn’t sleep last night, even though ny brain did,
This isn;t how I always experience fatigue, just how I’m experiencing it right now. The physical slowness, tiredness, is always there. However the mental tiredness comes and goes with the fatigue. Sometimes my brain feels just as tired as my body, and that is actually easier to deal with. At least everything I am feeling then is on the same page, right now it all feels to different to suceed at at.
I have so many ideas that I want to get out, but right now it feels harder to get the words out over the tiredness.
I just need a nap, sorry.
There are many ideas floating round my head. But I can’t seem to put them to paper, or screen.
I have the thd urge to write but I can’t get the ideas formed. I hate this.
This post is definitely just a tick box for today.
That’s all I’ve got for now, I wish I had more.
Sometimes I think I’m so used to be tired that I don’t even notice that I’m tired anymore. I struggle to say I even have fatigue, it’s just me. Like the pain and discomfort, for me it’s my normal.
And then there are days like today where all I can feel is tired. Where the world feels a little bit slower and I’m fighting against the tiredness in me, as well as everything else.
Now I should say something clever or at least a little bit profound about living like this. But I honestly just don’t have the energy for that today.
I need to go back to sleep, but the joys of being me I don’t actually know if I’ll be able to sleep. I guess will have to wait and see.
You’re going on a cross-country trip. Airplane, train, bus, car, or bike?
The freedom people get when they are not disabled will probably never cease to amaze me. The freedom just to answer questions like this, to not be stopped by who they are when they try to do so.
Many of these modes of transport aren’t accessible to me, and those that require planning.
As a full time wheelchair user, an airplane is not accessible to me, it is simply too risky. If you don’t understand what I’m talking about, then you are lucky.
While a train is generally accessible to me, with assistance. There’s no guarantee that all the stations I may want to go to are accessible to me. In fact from experience, money aren’t, and this often determines exactly where I will travel.
While buses at least in my area are accessible to me, they are only accessible to me if there isn’t already someone in a wheelchair on the bus. One day, the people that designed for which transport might learn that multiple disabled people can and often do travel at the same time.
Certain cars are accessible to me, but not many. I cannot just get a lift off anyone. And while I can learn to drive a specifically adapted vehicle, to do get the vehicle would cost me money I don’t have. This is before I even know whether driving is something I would be physically capable of.
I’m going to just say that we bike is concerned, I cannot ride one and we’ll leave it at that.
You don’t travel to a place on a journey, you visit that place as well. Accessibility doesn’t stop in modes of transport.
The world isn’t generally accessible for people like me in various many ways. I don’t really get to explore questions like this, without an element of ignoring reality. There’s a word for this, which took me as surprising amount of time to remember at 3:30 am. Cognitive Dissonance.
I think somebody’s gonna read this and wonder why did I take it so seriously? It’s obviously one of those writing prompts like what would you do if you won the lottery? Reality isn’t really supposed to be considered in these situations.
But I’m not really good considering reality when someone asks me these questions. I’m not really good at the cognitive dissonance. I’m thinking about myself and situations I might be in. My disability is such an integral part of who I am and the experiences I have. That it’s hard to separate myself from it, even in the situations.
I suppose I don’t really know what it’s like to think as a non-disabled person. I don’t really understand what it means to have that freedom on any level, whether that be thought or reality, it doesn’t seem to matter.
Maybe if I had a bit more freedom, in reality, it might be something that would reach my imagination, a little bit easier. Then perhaps I could answer these questions as they were intended to be answered.
The only way I reach this level of freedom in thought, as I am sometimes able to reflect in my writing, is to completely distance myself from the thought. In reality, my freedom is always limited by the world around me and there is nothing I can do about it. As soon as I put myself in the situation, my reality hits again, and I am limited by it.
Please forgive the state of this post as my sleep deprived brain is unable to reread it and make sure it actually makes any sense at all.
What activities do you lose yourself in?
I could listen to music all day ever day. It’s a major form of escapism for me. The only one I can partake in when the fatigue hits.
While I can’t say I have a favourite song, I love music to much just to pick one song. I can say that my current go to song is linked below.
Music is amazing. But as much as I don’t like silence, if I want to focus on what I’m doing then I have to have tv on rather than music. If I have music on I will just get too lost in the lyrics to be focusing on what I’m supposed to be focusing on.
So if I’m ever ignoring you, when I’m listening to music, know that I’m not doing it on purpose. I’ve just got lost in a song or two.
What’s your current go to song?
Which animal would you compare yourself to and why?
As you may have notice with these writing prompts, I might not always answer them the way they’re intended to be answered. But maybe that’s the point of the prompts.
So in order to answer this question, how I want to, I have to answer it to different ways. Reflecting my life, I suppose. The way I would answer it on instinct. And the way, I answer it as a disabled person. This might seem odd given the type of question being asked, but I think it’s just hardwired into my understanding of the world. And given the fact I’m disabled I think that’s fair.
My instinct is to go with an elephant. They’re clever like to watch the world go by. They seem to revel in the joys of an easy life, and sometimes that’s all I want.
Taking my disability into consideration I think I would be a good dog. Dogs are calm and loyal and they understand the needs of the people around them, believe me a say this from experience of my own doggies. I think these are qualities that my disability has taught me.
I would like to be a dog most of all I think. The calm relaxed lifestyle, the love, to never get bored of your food. All of it just seems better than being a human.
My Inaccessible Life 